I am in Sydney at the moment, we just saw Dr Teo (my surgeon) coz I am to go through another surgery to remove more tumor that is affecting my hearing...I can barely hear at the moment, I really don't want to become deaf on top of everything else - that will greatly affect my quality of life. So much is happening at the moment its difficult to explain it all with a text message. Dr Teo is happy and amazed as to how I am doing, I did tell him how hard we have had to fight hard to get to where I am now and I ain't stopping now! I am at the moment being admitted to the intensive care unit the night before my surgery because of the bad way my case manager basically scared the management here into thinking how very bad I supposedly am with the diaphragm pacing etc, they thought I was must have been almost a vegetable. I am still walking and talking enjoying life with my coffee making skills, movie watching, djing music loving friendly kind of guy!! Will add an update soon when I get my laptop. (this short message was texted from my phone earlier today, I was hoping it will go straight on my blog, but it went to drafts...I am still getting the hang of using this!)
Since then I have settled in and overcome the problems in melbourne I was having with getting an MRI scan done to check on my tumors but they didnt want to do it coz of the pacing even though the doctor that invented it and the guy who built the boxes wrote letters to them...maybe some nuts and bolts are missing in their brains coz the doctors in sydney are ok with doing the scan, I just have to be under a general anesthetic and ventilator as if I was having an operation done. so the scan will be done first thing in the morning and Dr Teo will do his best in removin as much tumor as he can but safely with out causing any further deterioration. I said to him I appreciate anything he can do for me.
We had a great hug and catch up. he told the other 2 surgeons from Vietnam in there all about me, my dirty jokes past and all the fun we have had over the years. He asked me to get for him the Steve Martin movie 'man with two brains' where Steve plays a neurosurgeon. I am downloading that as we speak! to end this post I want to mention my mother and the amazing best mum in the world she is. She has done so much (yet again) to get me here and is doing so much (yet again) in making sure things go well and I am understood...she is great at playing my interpreter!
I am scared...very scared about the surgery but I try (very hard) not to think about it because it is something I believe that really needs to be done and I really trust and believe in Dr Teo's ability's that all will be fine. There is also a huge added bonus on my side...the prayers and support of so many people, God and so many of the angels and saints.
Till next time (after the surgery)
Ciaooooooooooooooooooooo!!
- Daniel :-)
Tuesday, August 10, 2010
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Good Luck Daniel. Will be thinking of you and please have someone let us know how you are doing. Either on the blog or on the chordoma support group board on Yahoo.
ReplyDeleteSending positive energy and prayers! Sharon /NYC
Best of luck, Daniel. If a positive attitude can help the surgeon, you will do well! Joining in with Sharon, we all will be beaming prayers and positive energy your way.
ReplyDeleteJudy/PA
Chordoma support group
i have clivil chordoma too and it is hard because doctors dont know whats going on most of the time because its so rare .i hope your surgery goes ok! i look forward to reading more of your blog...
ReplyDeletemellimelwithchordoma
good luck with the Surgery Daniel, I am adding you to my prayers tonight, Our s yr old son Ben also had Clival chordoma this past 3 years and is recovering well from surgery at the moment from a reoccurance.
ReplyDeleteWarren
all the best tomorrow Daniel , i am writing on belhaf of my yunger brother whom been dealing with a clivus chordoma since 2008 , he wishes you and i do to all the best and to get out tomorrow safe and sound ,,,
ReplyDelete